From Dismissed to Finding Confidence: What It’s Like Living with a Chronic, Invisible Illness

In 2010, at just 20 years old, Chelsea Ashe started losing vision in her left eye and developed severe double vision. Several doctors dismissed her concerns, suggesting she only needed glasses. “It was my word against all the eye doctors saying ‘oh, other than you need glasses, your eyes are fine,’” she says. It was frustrating, trying to explain her symptoms accurately to doctors, but her mother knew she wasn’t one to exaggerate and pushed her to keep searching for an answer.

Finally, a family friend who worked as a healthcare provider in urgent care took her concerns seriously, ordered tests, and asked if she’d ever had an MRI. Within a month, Chelsea had her first scan and a referral to a neurologist, where she was diagnosed with multiple sclerosis (MS) — a chronic, progressive neurological disease with no cure and symptoms like fatigue, numbness, hand tremors and difficulty walking, among others.

“Some people think ‘oh, you were diagnosed with this chronic illness at 20, that must suck.’ But I say no, thank goodness I found it so early before it could cause more damage. It’s something that you really do want to get ahead of to save yourself further down the line,” she says.

In the months and years following her diagnosis, Chelsea had to learn how to “listen to her body.” Heat tolerance was one of her first challenges, and driving on a sunny day could leave her completely drained. She also learned the value of good sleep, often needing a full nine hours to recharge. 

Chelsea tried several different medication options before consulting with her neurologist to re-evaluate her treatment plan. Together, after considering Chelsea’s personal health factors and priorities, they decided on Ocrevus Zunovo^® (ocrelizumab and hyaluronidase-ocsq), a twice-a-year, healthcare professional-administered subcutaneous injection of ocrelizumab that takes about 10 minutes* to administer. Ocrevus Zunovo is a prescription medicine used to treat adults with relapsing forms of MS, clinically isolated syndrome, relapsing-remitting MS, active secondary progressive MS, and primary progressive MS (please see below for indications and important safety information). They ultimately chose Ocrevus Zunovo due to its flexible administration schedule and alignment with her active lifestyle.

*After the first dose, the time for treatment with Ocrevus Zunovo could be as little as 55 minutes. Patients are required to take premedications at least 30 minutes prior to each dose. Patients are monitored by their HCP for at least 60 minutes following the first dose, and for at least 15 minutes following subsequent doses.

Chelsea was drawn to Ocrevus Zunovo because it offered an alternative to daily pills or injections. “I’m always up for something new,” she said. “Hearing about a new [treatment] was exciting.”

She’s now been on it for about five months, and the treatment process has been positive. Through her experience, Chelsea has learned that feeling well-rested and staying hydrated before each injection has been key for her. Chelsea works closely with her healthcare provider to monitor her treatment and manage any potential side effects. In addition to other known side effects with Ocrevus, some serious side effects with Ocrevus Zunovo include injection-related reactions and infections (please see below for additional important safety information, including additional serious side effects).

Prior to Ocrevus Zunovo, she was on a daily shot, which she found stressful to manage. “When we traveled to see my mom’s family in Pittsburgh, we’d have to get a cooler to take my medicine up there to keep it cold. It added complexity to traveling,” she notes. She later switched to daily pills, though they also presented their own set of challenges. While attending her cousin’s wedding in Italy, she worried about her daily medications being confiscated during travel or running out while abroad. For Chelsea, switching to Ocrevus Zunovo eased those concerns by removing the need for daily medication management. However, patients should work with their healthcare providers to determine the best treatment plan for their lifestyle, preferences, and priorities. 

Chelsea continues to pursue her passions, which include riding her horse, James Tiberius Kirk (aka Kirk), who is boarded behind her home, working from home as a business analyst and project manager, knitting, crocheting, video gaming, and hanging out with her husband, three dogs, and two cats in southwest Virginia. She actively manages her health, using tools like her smartwatch and medication reminders to stay on track and monitor her energy levels. The twice-yearly treatment schedule with Ocrevus Zunovo has helped Chelsea manage her MS while focusing on the activities she enjoys. While every patient’s experience is unique, Chelsea appreciates how this treatment schedule has worked for her lifestyle.

Chelsea recalls feeling more energetic after her first injection. She also felt more confident in her balance, which her horse trainer also noted during her sessions. “He could see a difference once I started treatment,” she notes. It also helped her feel better equipped to manage her symptoms and focus on tasks at work. In clinical studies, Ocrevus Zunovo reduced relapse rate and slowed disability progression compared to Rebif in people living with MS.

When it comes to MS, Chelsea reflects that one of the hardest parts is getting a diagnosis, especially when symptoms are not physically visible. “It’s important to get multiple opinions and find a doctor you can trust. I’ve been fortunate to have doctors who listen and work with me.”

But a diagnosis sometimes doesn’t happen without advocating for yourself and having friends and family that advocate for you as well. Chelsea suggests finding someone who believes you and your symptoms, whether that’s a family member or a friend. For Chelsea, her mother was an incredible supporter, helping her get a diagnosis and staying by her side through treatment plans. “It was helpful to have her there to ask questions, do research, and get a second opinion,” she says. “Having someone go with you to appointments, even if it’s just for them to ask additional questions or to help you remember things, is helpful for the beginning stages. It’s a lot coming at you at once.” She also encourages people to give themselves grace while finding the right treatment and lifestyle adjustments. “The beginning is tough, but once you start figuring out a treatment plan and what works for you, it gets easier.”

For those with a new MS diagnosis, Chelsea recommends a positive mindset. “If you’re newly diagnosed, you can get into a doom-scrolling mindset and think ‘I’m not going to be able to walk’ and ‘I’m going to lose the ability to pick things up.’ Unfortunately, all of that is possible, but you can still do so much, and there’s a lot of stuff you can do to help prevent that and push those things further down the line,” she states. One of her favorite ways of staying positive and living a full life? Working with her horse, Kirk. Riding helps loosen her back and boosts her confidence, and she hopes to train him as a therapy horse. Right now, she’s working on some basic dressage moves with him. “It’s a lot of work, but it’s something that gives me a reason to get up and get outside. I like finding new ways to connect with him. It’s been great.”

For more information about Ocrevus as an MS treatment option, please talk to your doctor and visit www.Ocrevus.com to learn more.

These are Chelsea’s personal experiences and may not reflect the experiences of all patients.

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